Children's Hospitals Family Advocacy Day 2009

Matthew C., North Charleston, SC

2009-06-18T08:00:00-04:00

Eight-year-old Matthew was born with only half of his heart, a condition known as hypoplastic left heart syndrome. After a series of heart surgeries at MUSC Children's Hospital in Charleston, SC, Matthew is living the life of any normal child. Matthew has big dreams for the future and would like to be an astronaut, teacher and pumpkin farmer when he grows up. Matthew is also a natural fundraiser and inspired his school to raise $3,002.33 for the children treated at MUSC Children's Hospital.

Matthew and his family talk about health care reform at Family Advocacy Day.

Greg G., Cape Elizabeth, ME

2009-06-18T07:57:00-04:00

Greg is an extremely social, engaging 19-year-old whose spirit and courage is admired by everyone who knows him. He is passionate about his many hobbies including the Portland Pirates hockey team, horseback riding, bagpipes and U.S. and British military bands. As a result of the ischemic strokes that occurred because of his diagnosis of Moyamoya syndrome, Greg required two very specialized neurosurgeries, as well as a 13-hour orthopedic surgery to alleviate the severe spasticity of his leg and hip muscles that resulted from repeated strokes. All three of these surgeries and many other related treatments were performed at Children’s Hospital Boston. After extensive physical therapy to learn how to walk again, Greg traveled to London and Edinburgh. As New Englanders, Greg and his family are very fortunate to have access to Children’s.

Greg and his family talk about health care reform at Family Advocacy Day.

Rebekah T., Johnston, RI

2009-06-18T07:56:00-04:00

Rebekah is a sweet 4-year-old who loves school, being outdoors, horseback riding and Dora the Explorer. Rebekah was born about seven weeks early, weighing only 4 pounds, 6 ounces. When she left the hospital three days later, her weight had dropped to 4 pounds. Rebekah’s low muscle tone causes her difficulty in eating and to tire easily. Early intervention services have offered physical, occupational and speech therapy that have been helpful to Rebekah. She continues to receive treatment through Johnston Public Schools and Greenlock Therapeutic Riding Center in Rehoboth, MA. Children’s Hospital Boston has offered Rebekah’s family hope in receiving medical treatment and not giving up. Every blood work test that comes back normal is one more step toward learning what Rebekah is facing.

Rebekah and her family talk about health care reform at Family Advocacy Day.

Sean C., Mahopac, NY

2009-06-18T07:55:00-04:00

Sean is a fun loving 6-year-old boy who enjoys creative play such as make believe and theatre. He has lots of fun doing this with his three younger siblings. He also likes playing soccer and baseball with family and friends. When Sean’s mother was pregnant, the doctors discovered Sean had cysts on his lungs. After birth he was closely monitored by the doctors. After undergoing a thorough medical examination at Maria Fareri Children’s Hospital at Westchester Medical Center at age 2, Sean was diagnosed with pleural pulmonary blastoma. He underwent chemotherapy, radiation treatment and stem cell transplants. Thanks to Maria Fareri, Sean is in remission now and very much enjoys school and playing with his family and friends.

Sean and his family talk about health care reform at Family Advocacy Day.

Alyson & Andrea H., Lewis Center, OH

2009-06-18T07:54:00-04:00

Alyson and Andrea, 8 year-old identical twins, juggle a full schedule of activities – softball, junior varsity jump rope, bike riding, swimming, reading, and singing in their church choir. Somehow, the girls must find at least an hour each day for a treatment machine they call “Tigger” that pounds their chests clear of mucus, taking nebulizer treatments, and swallowing 20 some pills each. Alyson and Andrea do these things because they have been living with the genetic disease cystic fibrosis since birth. From the time of diagnosis, the family has felt a part of the team with the Pulmonary Unit at Nationwide Children’s Hospital. What their parents like best about the girls’ care is the emphasis on prevention through nutrition, medication, and other cutting-edge therapies. Through the help of Nationwide Children’s Hospital proactive care and treatment, coupled with the strength and support of their loving family, Alyson and Andrea are able to live longer, stronger lives.

Alyson and Andrea and their dad talk about health care reform at Family Advocacy Day.

Jakob G., Nashua, NH

2009-06-18T07:53:00-04:00

Jakob is an adorable and energetic 3-year-old boy who first visited Children’s Hospital Boston when he was only a few hours old. He was born with a bilateral complete cleft lip and palate but was rushed to Boston just after his birth in New Hampshire because of an emergency breathing problem, pneumothorax, that his birth hospital was not equipped to handle. Jakob remained at Children’s in the NICU for only a few days, but would return to the hospital for cleft lip and palate repair surgery three times before his first birthday. His longest surgical procedure was the one-stage repair of his lip, nose and gums which lasted 11 hours. Jakob also has had some trouble with his ears and went through two sets of tubes to get his chronic ear infections under control. He has only a very mild speech delay today and will return to Children’s for one more surgical procedure when he is a little older. A piece of bone from his hip will be used to reinforce the repair of his upper jaw. Jakob loves playgrounds and trains.

Jakob's parents talk about health care reform at Family Advocacy Day.

Caroline G., Nashua, NH

2009-06-18T07:51:00-04:00

Caroline is a beautiful and spirited 22-month-old girl who was born with a unilateral complete cleft lip and palate. Her older brother Jakob and father were also born with cleft lip and palate, so the family is taking part in a genetic study through Children’s Hospital Boston to determine whether or not a genetic syndrome runs in their family. Caroline underwent four surgeries to repair the cleft lip and palate at Children’s during her first year of life and also had ear tubes placed in her ears. At each step along the way, things could not have gone more smoothly for Caroline. Today, she continues to do extremely well, with no speech or eating problems. Caroline is very fond of her dolls and pretty quick on her feet, probably from always trying to keep up with her older brother.

Caroline's parents talk about health care reform at Family Advocacy Day.

Louise R., Wayzata, MN

2009-06-18T07:51:00-04:00

Louise is a happy, energetic 7-year-old girl. She loves her younger brother Sam and her parents. When she is not jumping rope or playing with her dog. Louise likes to teach her first grade class and even the school principal about epilepsy seizures, brain surgery and how the brain works. Thanks to Children’s Hospitals and Clinics of Minnesota, Louise has been seizure free since her brain surgery in 2007.

Louise and her family talk about health care reform at Family Advocacy Day.

Kelsie T., Richmond, VA

2009-06-15T07:53:00-04:00

Kelsie woke up last March with a serious headache and suffered an arteriovenous malformation rupture (AVM). Emerging from a coma a month later, she began inpatient rehabilitation for her brain injury. In rehab, she made significant improvements but Kelsie’s mother began to worry about how she would continue making progress when her private insurance would allow only 60 therapy visits for rehabilitation in a year. With the help of a case manager, Kelsie was able to obtain a one-year Medicaid waiver due to the severity of her new disabilities. Upon release from inpatient care, Kelsie began receiving physical, occupational and speech therapy at Children’s Hospital of Richmond. Kelsie’s mother and doctors are amazed at her progress; many children don’t survive this type of injury to the brain. Kelsie is still working on her pronunciation, processing, short-term memory and improving her limited motor skills. She recently started using her passion for music and a musical keyboard in therapy sessions to help her reach her full potential.

Cody H., Quincy, MA

2009-06-08T07:59:00-04:00

Cody is a wonderful, fun-loving, young man who enjoys after-school activities, riding his skateboard and hanging out with his family and friends. At 1 week old, Cody was diagnosed with the life threatening disease cystic fibrosis. Cody takes more than thirty pills every day to keep his body healthy. In addition to pills, he takes two nebulizer treatments and receives 30 minutes of daily chest physical therapy. Cody and his family work throughout the year with his physicians at Children’s Hospital Boston to keep him as healthy as possible. Cody may have a disease that’s considered incurable but he does not let it get in the way of being a teenager. He lives life to the fullest and welcomes every new day as any other teenager does.

Alexandra R., St. Petersburg, FL

2009-06-08T07:57:00-04:00

Alexandra is an inspiration to everyone in her family and a true role model of positivity in the face of adversity. As a baby and toddler Alexandra experienced multiple respiratory infections, bronchiolitis and pneumonia. Eventually diagnosed with asthma, Alexandra was put on a medication regiment that began to improve her breathing problems. She was referred to an ear, nose and throat specialist at All Children’s Hospital who discovered she had sinus cavities that were blocked by an abnormal bone growth. She underwent a series of surgeries to remove the growth, as well as, sinus polyps and adenoids. The results were dramatic and she became a different child. She was no longer cranky from not being able to sleep, she was able to get over colds without having severe asthma flare-ups, and in short she began to enjoy life. In order to support other children with asthma, Alexandra started her own fundraising initiative called “Tri 4 Asthma” where she gets people to sponsor her for every mile she completes in children’s triathlons.